Osteoporosis and Bone Research Academy Patient Advocates 

In 2022, we announced the ROS Osteoporosis and Bone Research Academy would be concluded in its original, research-focused form, and repurposed to become a home for our professional education and leadership cultivation products (The Osteoporosis and Bone Health Academy). Find out more here.

The needs of people with osteoporosis is at the heart of all the research we do. Therefore at least two patient advocates sat on each of our three Osteoporosis and Bone Research Academy Working Groups: Causes, Technology and Effectiveness.

Our patient advocates used their knowledge and experience to provide a unique and valuable perspective, which helped shape the development of the Osteoporosis and Bone Research Academy’s research.

The patient advocate members of the Osteoporosis and Bone Research Academy Working Groups championed the work by:

• representing what patients and carers need from future research (including priorities and concerns)
• influencing how new areas of osteoporosis care are designed and delivered
• advocating for people living with osteoporosis, so that new research also focuses on helping people live well with the condition
• ensuring proposed research studies are easy for people with osteoporosis to successfully take part in

These perspectives are not often addressed by researchers and clinicians, who naturally focus more on the scientific evidence, research methods, and value for money.

What did the patient advocates do?

Patient advocate members of an Osteoporosis and Bone Research Academy Working Group:

• attended Working Group meetings (including teleconferences), usually three per year, in London or near Bath (at the charity’s offices)
• reviewed research reports
• worked together with the other patient advocates, to discuss and collate the views of people with osteoporosis and their carers
• attended other meetings or events to report on the work of the Osteoporosis and Bone Research.

The position of patient advocate was offered on a voluntary unpaid basis. Any travelling expenses incurred to attend meetings were reimbursed in line with the charity’s Travel and Subsistence Policy.

I believe in the ‘patient as partner’ approach, to work with healthcare professionals in always putting patient outcomes first. This is particularly true in research, where precious funds must be spent to the very best effect. It was both a privilege and immensely rewarding to have worked on these challenges alongside eminent clinicians and researchers - Academy Advisory Committee Patient Advocate - Nic Vine

For further information on becoming a volunteer or patient advocate at the Royal Osteoporosis Society please see here.